My Voyage Through Early-Onset Alzheimer's

Conjuring Leonard Cohen

I am no good alone anymore. I was so much better than this. I could do this alone and I could do this with you. I miss me. I miss you. I miss who we were. (for Wayne)

*****

So glad that Caarin took me to see the Leonard Cohen exhibit at the Jewish Museum. The exhibit which closes Sunday, September 8, is titled, A Crack in Everything. The title comes from a verse in one of his poems.

Ring the bells that still can ring

Forget your perfect offering

There is a crack, a crack in everything

That’s how the light gets in

I take that literally. To give credence to what I can share, and describe the experience of pushing myself through the eye of the needle, and threading my words in some kind of order.

Leonard Cohen was a very lucky man. An artist, a poet, who loved words and stumbled into greatness when he decided at the age of 33 to play the guitar and put his poetry to music. The more I learn about him, the more I see he was amusingly tough, smart, clever. A self serving high priest. A fallen angel.

I was once lucky and am now unlucky. I wasn’t always this way. I laughed until I cried, felt rapture in the arms of my lover, that sweet gentle tenderness as I held my babies. Elation when the thing I was making turned into art. My friends and I understood each other without speaking. I looked forward and seized the day. I was just like you.

Now no amount of anything will save me. There is no cure. and I have progressed, and this illness progresses mercilessly every day. I am told to practice acceptance. No one gets out of life alive, so enjoy the time that’s left. I go on the dementia support group zoom chats looking for someone who is like me. I go to programs where people with dementia attend. I look around for someone who is like me, someone who is aware of what has happened to them. Who can articulate what they’re going through. I’ve seen people in all stages of decline, one with her head in her lap, another holding a stuffed animal and staring blankly into space. I am clutching onto the notion that if I remain aware, I will not progress. But that’s ridiculous, as I have and will progress unless something else takes me away rather quickly. It’s not death I am afraid of. No. My fear is living with this, lingering, unable to walk, speak or do anything for myself, and being aware of it, locked inside and broken. People I know who have a diagnosis and are in the earlier stages do not understand. They are not there yet. I hope for their sakes that their trajectory is slow and the pathology is not so aggressive.

*****

Back to Leonard Cohen who wrote that there is a crack in everything and that’s where the light gets in.

He died after a fall, in his sleep. He had cancer, but that’s not what killed him. He lived and loved (a lot) and constructed an imperfect perfect life. He died with all his “marbles”. Lucky man.

I want to live and die without regressing into the kind of infantile paralysis that Alzheimer’s becomes. I am still able to seek refuge in words, art, music and poetry, but over the course of this “thing”, everything I touch, say, and do, gets twisted. It’s groundhog day every day. I am aging rapidly, a kind of reverse adult Progeria, that rare genetic condition that causes a child’s body to age fast. While I rapidly age, I am losing my abilities, everything I’ve learned in reverse order. Bless my dementia mentor, Laurie, who early on instructed me to put my clothes for the next day on a hanger. Repetition helps, though I still have to talk my way through it (right foot through the pant leg, then the left foot, now pull ’em up. Open the shirt, put the left arm through, now the right arm, and pull it down. A ghastly admission, and certainly not poetry).

*****

So I come here and write about art and music. The life of the mind. Matters of the sublime. I can barely get through my hygiene routine, and have trouble chewing and swallowing a meal, become confused transferring different foods in containers onto a plate and heating it in the microwave, but hey, I can still appreciate beauty, and can still use spell check.

*****

Bob Dylan and Leonard Cohen were two of the heroes of my cultural era. Some have called them the Mozart and Beethoven of the 20th century. Dylan, like Mozart, is a prodigy. He wrote Blowin’ in the Wind in fifteen minutes on a napkin when he was 21. Cohen wrote Hallelujah over the course of five years. Beethoven, as opposed to Mozart, has always been painted as a composer who struggled and suffered for his art. Whereas Mozart composed symphonies in rapid succession, completing three of his greatest in one summer, Beethoven took years to complete his. Like Beethoven, Leonard Cohen would also take years to perfect a great song.

I often have trouble completing a sentence, a paragraph. I was not like this before…I wrote scripts, made films, was a teacher and a source of inspiration to my students. A doer. Active and engaged. Creative AND analytical. But I will not be remembered for that. I will be remembered as the woman who sadly came down with Alz. I will be remembered as putting up the valiant fight but ultimately succumbing, because no one survives this. No one.

*****

The exhibition conjured Cohen, his words, his visage, his music, his perfect imperfection. Resurrected. I lose myself in his poetry, his gravely voice, freed temporarily from thinking about myself.

He was talking about the inevitable defeat that awaits us all. His instructions were to never lament casually. If one is to express lament, it must be done within the confines of dignity and beauty.

Caarin has been visiting often enough to understand that this disease has impacted my gross motor skills, moving my body through space, my flexibility and strength. I have trouble negotiating turns and coordinating the movement of my limbs. My fine motor skills are not as severely impacted. I can still draw, write and type. She walked with me to the Hoboken waterfront, after I “rehearsed'” going there with my husband, and a few days later with Theresa. It takes a lot effort to get myself out the door, but I pushed myself and this prepared me to go with her to New York. Going to the waterfront with her was a rehearsal for being able to the Jewish Museum. I guess we can think of this as a marathon for a person in the middle stages of this disease. Walking is very slow now, shorter steps, kind of a shuffle with moments I catch myself as I lose my balance and veer off to the left. There is fear of falling (especially since I fell down the marble stairs at The Neue Gallerie and injured my leg and almost broke my back). When I turn and move, I am hyper aware of being in a body that doesn’t move easily.

I wanted to show Caarin the beautiful Hoboken waterfront, but I realized I had not been down there in over a year, when I went with my husband two weeks ago. It’s not that I don’t remember the route. Walk up to Hudson Street, down through Steven’s park, across the street, and head down the hill. Simple. But the act of walking any distance is exhausting. I look for a bench. I sit.

We looked out on the water. A yacht, a Norwegian ocean liner. I snapped a photo. Geometric harmony.

My husband encouraged me to continue walking, and so we walked out onto the path that juts out onto the water. Then we headed home. I didn’t know that Stevens Institute had built a new structure to replace the rickety wooden staircase that connected the waterfront (which is 3 feet above sea level) to the campus that encompasses the acreage that is highest above sea level in Hoboken.

Instead of the very old wooden stairs I used to climb, now there is a concrete and steel structure. I crossed Sinatra Drive, my husband holding my arm, and pulled myself up the stairs grasping the banister. The new structure is separated into three staircases, with a landing that has a bench that overlooks the waterfront. The landing is midway up, and then there is a long flight of stairs to the top. I sat on the bench at the landing reserving some energy for the next flight, and snapped another photo, and then carefully maneuvered myself over to the longest staircase that connects the structure to the campus.

*****

The trip to the museum with Caarin turned out to be thrilling. A conquest for me. A victory over my physical limitations. Caarin seems to understand intuitively what I am physically capable of and how important it is to push myself, but also be careful. She doesn’t hover. She just has a sense of what I can handle, and offers her arm or hand when I need support. This made traveling with her easy.

I believe that there is a spiritual reason for Caarin and I meeting at this point. How bizarre and beautiful that my 53 year old niece, who I would have never met if not for this blog, would find me, and suddenly appear at my door. As much as G-d is unknowable, and we are like ants to the enormity of G-d, meeting her now restored a bit of my beleaguered and dwindling faith that there are forces at work we can’t understand.

I told her about being eleven and standing (hiding) behind the wall that separated the kitchen in our Bronx apartment, where my eighteen year old sister was telling my parents that she was pregnant. At that point “Caarin” was unborn and growing inside my sisters womb. It’s almost fifty four years later and my sister refuses to see me and hasn’t seen me in over five years. And then Caarin appears out of nowhere. The mystery of time. Caarin’s imperative to learn about her family of origin, her birth mother, led her to me. The crack in everything that Cohen wrote about…let the light in.

I felt like I often do when in Manhattan, walking along familiar streets, that I am walking through my past as an impaired person experiencing a heightened reality, a reality that is too real, too sharp, too intense, so much so that I am broken by it’s intensity.

We crossed the street at 91st and Fifth and entered the Jewish museum. I handed the guard my purse, who checked it and I walked in easily. I paid the entry fee with my credit card and signed the receipt. Caarin waited as I stuffed the receipt into my wallet and put it back into my purse. We walked through the doors and into the exhibit.

A Crack in Everything chronicles Cohen’s life and art through visuals and audio based on interpretations by other artists. The immersive show spans the museum’s three floors and contains commissioned contemporary works by artists as well as interpretations of Cohen’s songs by other musicians.

“Passing Through,” a large scale work by George Fok featured audio-visual montages of Cohen throughout the years. It celebrates his singularity, his music, his charismatic persona, and his stage presence. I maneuvered around the crowd at the entrance to this large room, and stood against a wall until Caarin saw a seat available and beckoned for me to sit down. Everyone in the room was in awe of this conjured Leonard Cohen. This felt to me like a multimedia seance. It was palpable.

When the screens went dark I knew people would be getting up and heading out of the entrance to the room. I maneuvered around the people entering and the people leaving, hoping I would not bump into anyone and tip over. I relied on Caarin to direct me. We turned right, headed down the corridor and went into another room, where the walls were covered with a timeline of Cohen’s life and work. He was born into a middle class Jewish family in Westmount, Quebec on September 21, 1934. His Lithuanian mother Masha Klonitsky was the the daughter of a Talmudic scholar and emigrated to Canada in 1927. His paternal grandfather, Lyon Cohen, was the president of the Canadian Jewish Congress. His father Nathan Bernard Cohen owned a substantial clothing store but died when Leonard was only nine years old. The family observed Orthodox Judaism and belonged to Congregation Shaar Hashomavin, to which Cohen retained connections for the rest of his life. On the topic of being a Kohen (Hebrew word for priest), Cohen said he was told he was a descendent of Aaron, the high priest and brother of Moses.

“I Heard There Was a Secret Chord” by Daily Tous Les Jours is an audio installation in which visitors can hum “Hallelujah,” into microphones along with other humming voices heard through speakers based on real-time data, creating an invisible vibration.

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20 thoughts on “Conjuring Leonard Cohen”

Thank you so much for your blog. My wife lives with Early Onset Alzheimer’s and is now in a facility. Reading your blog is closet I come to understanding what she is going through. It is both enlightening and difficult at the same time.

Apologies for not getting back to you sooner. I want to thank you for reading my blog.

Can you please tell me more about your wife and how long ago she was diagnosed with Alzheimer’s? I have a lot of questions and hope you will answer them.
At what age was your wife diagnosed and how (FDG Pet Ct or Spect scan through a neurologist)?
Was she diagnosed while she was still working?
Was the disease fast progressing?
How was she 3 years after the diagnosis?
Did she have gross motor loss, difficulty walking?
Was her speaking impaired- aphasia?
Why did you place her in a facility?
How did she adjust?

It’s rare for a spouse whose wife has early onset to read and comment on my blog. I really hope to hear from you and learn more about your story.

Once again, Minna, you deliver the most honest humbling thoughts and feelings. I would bet that your blog has helped many many people. Thank you for continuing to write.

What a blessing to have Caarin being a part of your life and vice-versa. G-d works in mysterious ways. Too bad your sister is so unwilling to be a part of her daughter’s life and also your life. Some day she will regret her choices and decisions.

The Hallelujah song has always been one of my favorites. Thanks for sharing the lyrics for everyone.

There is one thing you said in the beginning or middle of the blog about people only remembering you for having AD. I have to disagree. Minna, you have touched lives for so many years through your teaching, writing, film making, art, and more. I believe wholeheartedly that people are going to remember you for all of those things and they will be grateful for having known you whether it was business related, student-teacher related or socially. YOU ARE so much more even through this dreadful disease.

Linda, you always write me with positive affirmations, and I want to thank you for this. I also want to thank you for mentioning my blog on your May 21st post, “Fear of what to say”. Feel free to post the link to my blog on yours if you like. I think your readers can learn a lot from my blog.

You write that your mother had Alzheimer’s for 18 years. Whoa! I find that hard to fathom as that is actually very rare. The longest I have read about is 12 years. The average is 8.3 years. Many with early onset (like Pat Summit) live 5 years. Your mother must have been very strong and physically healthy.
At what age did it start? It must have progressed extremely slowly, and she must not have lost her executive function for a long time. It looks to me (from your book) that she was able to cook and follow steps in her self care for a long time. Was her language and speaking affected? What about her gross motor skills (walking?) At what point (her age) did you place her in a facility and why? Questions I hope you will answer.

Minna, I somehow thought I answered you, but I just noticed I did not! I apologize. 🙂

Yes, Mom was a rarity for sure. She was a very strong-willed woman who was pretty healthy. She remained independent for quite a long time. This started in her early 70’s when my father noticed strange behavior and blaming him for things she actually did.
She was high functioning even after moving to assisted living. She was in her 70’s when she moved to an independent living facility. But there was a slow progression to where in a couple of years she needed assisted living.
She was an artist, very creative and loved to paint. After losing the ability to paint b/c she couldn’t remember how to mix colors, she took up woodcarving.
Her language and speaking was affected several years after the diagnosis which was frustrating for her. Later she became non-verbal and when she did try to speak it was only a word or two & hard to understand, but I understood. Her walking became affected later on in the disease and she began to fall. It was difficult to watch and I knew it wasn’t a good sign. But I have to say, she was a fighter for as long as she possibly could be.

Dear Minna,
Thank you so much for another lovely entry of your blog. It is so wonderful to hear about Caarin and you and the beautiful relationship you are building. It truly is a miracle how you two were brought together.
Continued blessings to you both,
Ruth

Dear Minna,
We had an extraordinary adventure last week. You were nervous – for good reason. You had doubts. So did I. But you were brave and we both believed that we could do it. Not only did we do it – we enjoyed it!
We have known each other such a short time, and it already feels like a lifetime. You are as familiar to me as my own adoptive family, whom I have know my whole life.You are a loving, bright, funny, woman. The look you gave me in the gallery when Leonard Cohen’s voice suddenly emerged from the speakers in the gallery with the Wurlitzer and you said “that’s creepy”. You make me laugh!
Minna – you are so much more than this struggle. I know that you feel diminished from what you once were, but you are whole to me.
My favorite part of the day was when we sat next to each other on the bench humming Hallelujah with you. At that moment you and I were connected to each other singing a song that recognizes the holiness of what it is to be human in all of our imperfection.
I treasure every moment that we have together. Never in my wildest dreams did I imagine that knocking on your door would yield such a meaningful and rewarding relationship. Never.
It was my privilege to accompany you to the Leonard Cohen exhibit. I look forward to all of our tomorrows, whatever it may bring.

Hallelujah for you Caarin. That you are in my life and that you bring joy. Thank you for giving me a reason to believe in myself again. I think you should write that book, and make movies again. Knitting is great but you can multitask. Life doesn’t stand still and you can still reach for the rung. Don’t be afraid. Louise Bourgeios, the fampus sculptor, lived to be98. I met her when she wrote a recommendation for me for graduate school. Her career took off when in her sixties, and she went on to become one of the most important artists of her generation. I have lost my health, but I have met you. I have ambition for you. Begin again.
Love you, Minna

Dear Minna,
I am forever greatful to be a part of your fascinating life you have today. I may never fully understand the extent of what you are feeling and going through, but I want to do my best to aid in any way I can. You are an extremely intelligent woman whom I learn something from every time we meet.
I find your blog to be very informative and look forward to any and all new posts you may add. I am so happy to bare witness the change that Caarin has brought to your life. A true Blessing from God!
All the steps you have taken and preparations you have made for this adventure to the Jewish Museum allowed you to relax and enjoy yourself with the aid of Caarin. I am so happy and thrilled for your growing relationship with your niece Caarin and all the “tomorrows” you both will have!
Continued blessings to you both!!

Thank you for another post, Minna. Leonard Cohen is one of mine and my partner’s favourite singer. We play his music in our house often. We are proud that he is Canadian. I am glad you are sharing your feelings and experiences with us. It helps me to understand life. To me, you are not locked up inside nor outside. You are telling us your inner world. You are still venturing into the outer world – much more than me. I’m a bit of a hermit, a homebody.
I love hearing about New York, your venturing out, the streets, the museums, the stories. Nice to hear about Caarin and Theresa. So keep them coming.

Lily,
Glad you liked my post about leonard Cohen. Of course as a Canadian you feel proud. So may great artists, writers and musicians hail from Canada – Joni Mitchell, Margaret Atwood, Michael J. Fox, Alanis Morisette… to name a few.
Venturing out is hard with Alzheimer’s because I can no longer do so alone. But being inside all the time is bad for the soul. What would I write about? It’s okay to be a homebody, but try not to be hermit.
Fondly,
Minna